Living with cancer blog

Preventive mastectomy — a personal choice

Are you someone who's struggled with the decision to have preventive mastectomy?

The news that Angelina Jolie underwent a preventive double mastectomy after discovering that she carried a BRCA gene mutation is a situation other women sometimes face — or already have faced.

It's not an easy decision, and it's not always clear, but it's an option — and a personal choice.

BRCA1 and BRCA2 gene mutations are uncommon. However, if you've inherited the BRCA gene mutation, you have a much higher risk for developing breast and ovarian cancer.

Making the decision to remove both breasts can reduce your risk of developing breast cancer by 90 percent. However, it doesn't guarantee you'll never develop breast cancer because it's difficult to remove all of your breast tissue.

Every woman faced with this decision needs to weigh the benefits and risks and decide what's best for her. The emotional burden can be significant in deciding when to have the procedure based on life circumstances and if one is still of child bearing age.

A preventive mastectomy is really a personalized decision. Here are a few important points to consider when making your decision:

Take your time — this is not an urgent decision. Consider all the information you have and ask all of the questions you need to ask. Discuss your concerns with a breast specialist who is willing to guide you through the decision-making process.

Talk with other women who've been through the surgery. Everyone has a unique experience — talking with others who've been through the same surgery can give you a sense of what to expect.

Meet with the breast surgeon and plastic surgeon — discuss your options for reconstruction. Mastectomy with reconstruction is an extensive process and can take many months to complete. Ask about the risks and complications. Get a sense of how much time is needed to complete each step and recover.

Consider talking with a counselor — talk about how to anticipate and positively deal with the changes in your appearance, body image and life circumstances.

Talk with your family — be open and honest about the emotions and fears that you and your family may experience during and after the surgery.

If you're at high risk and decide that preventive mastectomy isn't the best choice for you, keep in mind that you have other strategies for early detection and risk reduction, which include:

Breast cancer screening and surveillance — based on your personal risk, which may involve mammogram and breast MRI screening every year beginning as early as age 30.

Clinical breast exam performed by your health care provider on a regular basis — as well as breast self-exams on your own to be aware of any changes in your breasts.

Talk with your health care provider — about the risks and benefits of using preventive drugs that block the effects of estrogen (chemoprevention).

Surgery to remove the ovaries — BRCA mutation also carries an increased risk of ovarian cancer. Removing the ovaries also reduces the risk of breast cancer in women who are at high risk.

My situation is sort of unique. I have never been diagnosed with the BRCA gene, although my mother died of breast cancer at 68. I have OCD where cancer is concerned. For 40 years I have had a daily round of thoughts of cancer which I cannot shake. I have been on medication, therapy, relaxation therapy - anything my doctor could provide for me, yet there is no change. The thoughts of cancer circle my mind almost constantly. The best way I can describe it is that I am "waiting for the other shoe to drop" every day of my life. I have no enjoyment of life. Every mammogram, every test, every bodily change is such an agony I usually take months to recover. I want my breasts removed. It is as simple as that. I have grown to hate them. I don't want reconstructive surgery. I just want them gone. I have lived like this for 40 years and I don't know how much longer I can cope. I've been through years of therapy, countless medications, relaxation methods - nothing helps. The fear far surpasses any treatment. Could I be considered for this? Please believe that I have thought of this for several years and I am willing to go through anything to have the procedure done. Is this ever done to so-called "healthy breasts" when a person doesn't have the gene? I speak to friends, family and my doctor and they al think I am totally over-reacting - but they don't seem to understand the hell I live in. Thank you for reading this rather long comment.

Janice Gravelines

June 21, 2013 10:09 a.m.

Melissa, I am sorry to hear about your mom and your positive test results. At least you have a choice that your mom never had the opportunity to have. I am glad to hear you are opting for the surgeries. My wife chose to have all her surgeries all at the same time. I believe she was only in the hospital two days and recovered in about 7-10 days, where she was back to somewhat normal activities. Her ovaries were removed with laparoscopic surgery, so was a little easier. As far as waiting, I would discuss with your OB/GYN MD. If your family members developed cancers at young ages (which most BRCA carriers do, I would try to have the surgery as soon as possible. My wife was diagnosed at age 37 and she had a cousin diagnosed at age 34. Each person/family is different, so probably no way to tell what age it could appear. Since the recovery is manageable, I would try to have it done soon and then you will still be able to care for your mom. Since my wife already had cancer, her oncologist already had a surgeon lined up to remove the cancer and then he took care of the bi-lateral mastectomy. I would think your GYN MD could recommend a surgeon for you to meet with. She actually had 2 surgeons perform the two separate surgeries back to back to be done with it. Thanks for sharing your story and pray that your surgeries are a success. Will also pray for your mom and that your children are all negative. You are very courageous and your family should be proud of you.

Chris

June 14, 2013 9:00 p.m.

Chris,
Thank you for sharing. Im sorry for your loss. Your story just reinforces my personal decision to have the surgery without reconstruction. I am NOT defined by my breasts. I define who I am. I will not let bc kill me like it has every generation on both my mother and my father's sides. My mom may loose her battle, but we as a family will live to fight on. I have two beautiful daughters and they will be tested. This cycle is viscious and a cure needs to be found. I wish you love, peace, and courage.

Melissa

June 14, 2013 8:50 p.m.

I got my BRCA results and as expected they are positive at 84%. That was last Tuesday. That same friday my mom was rediagnosed with stage IV triple negative metastatic bc. Her third time. We are all devastated. There is ni question I want a bilateral mastectomy. But I have to care for my mom and postpone it. Is that okay? My ins wont cover a genetic counselor. What should my next step be? I'm ready NOW for my surgery. I am 36 with three young children. Already had a partial hys yrs ago. Now going to do a full. Im not scared, just anxious. Any ideas, comments, or suggestions are appreciated. God bless us all.

Melissa

June 7, 2013 6:43 a.m.

I began anti estrogen therapy with Arimidex. It has raised my blood pressure signifigantly and I am working with a cardiologist to bring it down. I also have bouts of pain that seem to be like how people describe fibromyalgia. What mechanisms in arimidex cause these side effects. My doctors seem to be as much in the dark as I am. I would like to find a way to stick with it. Sometimes I can work thru the pain in a pilates class, and sometimes it overtakes me. I called astra zeneca and asked questions but the people I talked to were reading from a script and were unable to address my concerns.

Sarah

June 6, 2013 2:44 a.m.

Credit be given to Angelina Jolie for bringing people's attention to the subject of breast cancer and preventative mastectomy. Given the unpredictable time still needed to find a cure this is the only credible avenue left to protect oneself. Cheers Angelina!

Luisa

June 5, 2013 12:03 p.m.

I was diagnosed with breast cancer and had a mastectomy 24 years ago. The next year, when my oncologist found a tiny lump under the other armpit, I chose to have another mastectomy. It was the best thing other than marrying my husband that I've ever done. I could stop looking over my shoulder to see what was gaining on me, and I had symmetry. I never gave a thought to having reconstrction, and I can wear any bra size I choose.

Cindy

June 5, 2013 11:59 a.m.

Why then did Myriad labs put those of us with the BRCA gene back into the general population pool several years ago? This information came from the Mayo genetics department.

Patty

June 5, 2013 11:35 a.m.

I had a radical mastectomy 6 years ago - opted out of reconstruction - as an RN Home Health Administrator (20 years) and am now a community resouece nurse for DSHS. I have witnessed the horrors of failed wound healing secondary to radiation. I have not been BRCA tested but am from a family rittled with breast CA, ovarian CA, colon CA and recently had pre-CA polips removed, am now considering breast reconstruction and preventive mastectomy...but am very fearful of ending up with massive, non-healing wounds. I am clearly conflicted and am very intersted in your opinion? This is the first time, ever, that I have put words to this concern and a appreciate your thoughts. Sincerely and Thank you.

LaVerta

June 3, 2013 8:50 a.m.

Peg,
I am sorry to hear your story. It is ridiculous that some insurance companies do not see the benefit/potential savings from genetic testing, yet alone the agonizing struggles of people who have to live with cancer. My wife's testing was covered by our insurance company (once she was diagnosed). After her positive result, all her first degree relatives and many second degree relatives went ahead with the testing. Some were covered by insurance while others were not. It is my understanding that the relatives who were not covered just paid out of pocket. The were able to use my wife's genetic test to tell them which genetic mutation to specifically test for. This dropped the cost of the test from $4,000 down to $500 since they were able to only test for the specific mutation that runs in her family. You may want to encourage your relatives to discuss with there doctors and pay for the testing on their own. I pray that your new treatments are successful and wish your good health.

Chris

June 1, 2013 10:44 a.m.

We are at a place where the information to the public, the medical community and the insurance companies are not in sync. My story is: I am in a large family with a strong history of cancer-breast and prostate. My caring family physician sent me to a breast specialist to be tested for a genetic mutation. He refused to perform the test due to the fact insurance would just reject it and the cost was too high. As a his office is a member of the hospital connected practice - he would also be penalized for ordering a &quot;medically un-necessary test&quot; that was very expensive. $4000.00 is what Myriad Labs charges for the BRCA test. Since they have the exclusive copy right on that Human Gene they alone can perform tests on that gene and charge what they want. The actual cost is less than $500.00 to Myriad. I was denied the test, and 3 years later diagnosed with Ovarian Cancer stage 3C. Had complete hysterectomy, both ovaries removed,18 months of chemo and a - now insurance covered- genetic test. I am BRCA1 positive along with multiple first degree relatives. But many in my family are still denied the BRCA test by their insurers. The cost to my insurance company for my cancer treatment was FAR over $200,000.00, exceeding the initial cost of the genetic test and preventive surgeries. Too bad that breast doctor and my insurance could not see the value saved if they had ok'd the initial genetic test. Currently my cancer is back and I am $8000.00 in debt from my last treatment costs

Peg

May 30, 2013 2:22 p.m.

My experience is not to expect other people to remember to check your breast. My GP never reminded me of it and never volunteered (despie having had an in situ dUctual event already), so it was just because I did check myself that I found the lump, Thank God. Not even mammograms are 100% reliable, I had my last one in February and in August I found that almost 2 cm lump! Because it was Month of Breast awareness and I was reminded to make sure , I did check.
Do not rely on anybody else for such an important commitment!
So I decided to have double mastectomy and still do not regret. I also had my ovaries removed at my request but was not told that what I should have had , in order to attain the prevention I was aiming at ,was actually a hysterectomy. I cannot believe the doctors did not explain that to me so one of these days I will have to undergo another operation for that because Tamoxiphene is a funny medicine , prevent breast cancer but sort of promotes cancer of the uterus!!!Great drug .. But what can you do, Aromasin was hurting my joints I had to give it up after 18th months.
I have a strong family association with breast cancer even though genetic testing did not find in me the BRAC genes
Let's not give up, we need to be informed though.
All the best .

Luisa

May 30, 2013 12:29 p.m.

I was diagnosed with triple neg dcis bc 3 years ago. I was also brca +.
I had 6 rounds of TAC chemo , then bilateral mastectomies with reconstruction done at time of surgery. I got my genetic mutation from my father who also had BC. My daughters were tested for BRAC &amp; only one had the mutation for BRCA. She is30 yrs old &amp; had the preventative double mastectomies last year. She also had to have ovaries &amp; Fallopian tubes removed, later she had to have abalsion on the uterus. Which she should have had a hystectomy in the begining .

Suzanne,OTT

May 30, 2013 12:03 p.m.

I agree that it is a personal choice, but it is an easy choice and clear choice. My wife was diagnosed with early stage BC in 2005. She had genetic testing and tested positive for BRCA1. She had strong family history on father's side of family and was being watched closely by Dr, however never suggested genetic testing. Although her cancer was early stage, it was a very aggressive type (HER2+), which is common with BRCA1 carriers. Once diagnosed, underwent extensive chemotherapy, bilateral mastectomy, and ovaries removed. She had always exercised, maintained healthy weight, never smoked or drank alcohol. She even continued on preventative chemo for 1 additional year. Four years later the cancer returned in her neck and chest wall. My wife passed away in 2011 and left behind our four young children, a loving husband, and many family and friends. An early stage cancer took her life, just like it did to her grandmother, two aunts, and a cousin. She would have loved to have the choice of a preventative mastectomy to reduce her cancer chances from 90% to 10% and be able to watch her children become adults and have their own children. If she only had the knowledge we have today, there is a great chance she would still be alive. All my children will have genetic testing and if positive, will have the preventative surgeries. Several of my wife's cousins have had prevent surgeries and are cancer free. So if you are a BRCA1 or BRCA2 carrier, please have the surgeries....

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